Guest guest Posted December 7, 2000 Report Share Posted December 7, 2000 Crew- My wife anne had surgery in June in an attempt to debulk 4.5 cm tumor in right ear. Tumor was cut in half but she lost hearing. Back in October, MRI found tumor had re-grown aggressively. It was back to 5cm. Surgery November 29 successfully removed entire tumor. Facial nerve was cut. Fortunately, Dr. Elowitz and Dr. Feghali of Beth Israel (NYC) were able to tease out fascial nerve at root and reattach. Very happy to have entire tumor removed. Dr's say it will take 6-9 months to regain use of right side. Will have gold weight placed in eye to help it close. Using Real Tears and Aqua Lub to keep eye moist. It was difficult for her to go through two surgeries in 5 months. She does not regret giving debulking a try. We know it has worked for some people. Although I don't get to reply as often as I would like, I read all relevant postings. The Crew is an invaluable asset as we go down this road. It feels like yesterday (diagnosis 12/97) me and my wife were just learning about all this. Now we are starting to feel like veterans. It is important for everyone to keep sharing their stories so that new comers can educated and to keep adding to the knowledge base so that better treatments can be found and shared. Ceretti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2000 Report Share Posted December 10, 2000 Jane, I hate to admit it but I sheepishly put them on afterwards. I generally don't like to cause waves but will crack a joke or prolong a conversation so they may see my point (which is usually disregarded anyway). I agree they don't normally see us as being reasonably well informed on a complex disorder. I think they like to have the upper hand in the matter. In the past, the earplugs were only offered and I kindly said no thankyou. She seemed to insist this time so it appears like a new protocol or something. ---------- From: Jane Sent: Sunday, December 10, 2000 2:46 PM To: NF2_Crewegroups Subject: Re: Re: Wife's 2nd Surgery - Good Answer, . In all my previous MRI's I told them I didn't need them even when I heard a little yet long ago. BUT this last one in Oct after I told the guy I was totally deaf he still put them in my ears. Next year I am going to boycott the MRI scan if they attempt to put the ear plugs in again. I am still ticked!!!! They don't listen. I am proud of you telling them. Jane Re: Re: Wife's 2nd Surgery > >Lori Jo, MRIs are painless but they are really noisey. > > > > Quote Link to comment Share on other sites More sharing options...
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